Imagine you've been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do?
My name is Avery Lynn Canahuati, I'm almost 5 months old, and this has become my reality. But before I die, there's a few things I'd like to accomplish...this is my bucket list and my story.
SHARE IT & HELP ME TELL THE WORLD ABOUT SMA!

Friday, September 21, 2012

Important Legislative Update

Please continue to share Avery's story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers. The more people who are aware of SMA, the less likely future children will be affected by SMA, and the more likely there will be a cure for Avery's friends who already have SMA!

The following update is from the FightSMA website:Legislation to authorize the National Institutes of Health (NIH) to support the creation of up to 20 pediatric research consortia focused on diseases such as spinal muscular atrophy (SMA) passed the U.S. House of Representatives on Wednesday with broad bipartisan support.The National Pediatric Research Network Act (NPRNA) promises to directly benefit the fight against SMA by supporting collaborative pediatric research including multi-site clinical trials for rare pediatric disorders like SMA.

Don't forget to share Avery's story by following & forwarding her blog, following her on

Twitter (AveryBucketList) and Like her on Facebook (Averys Bucket List)! The more people who are aware of SMA, the less likely future children will be affected by SMA, and the more likely there will be a cure for Avery's friends who already have SMA!

. . . for contacting me regarding your support for the National Pediatric Research Network Act. I appreciate you taking the time to share your views with me.

As you may know, this legislation was introduced by Senator Sherrod Brown on July 31, 2012. Currently, this bill is pending before the Senate Health Committee. I will keep your position on this bill in mind as it moves through the legislative process.

Thank you again for contacting me. Please continue to keep me informed about issues of concern to you and your family.